MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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tcell's picture
Replies 1
Last reply 8/1/2014 - 6:59am
Replies by: RJoeyB

So I had another appt with my onc yesterday and we scheduled the first Ipi infusion for Aug 13.

the idea is to have about a 2 week washout for Mekinist which I stopped taking today. The I will stop Taf 5 days before the infusion and continue 3 days after each infusion again. So in reality it is a parallel treatment as 5 days is no real washout.

Due to my high tumor burden in chest / lungs, abdomen, liver and bones this may become a bumpy right  and if Ipi does not kick in within a reasonable timespan I run the risk of not making it. My LDH is 800 now.

next staging is only going to be after all 4 infusions as according to my onc it would not change anything. He did not want to make any statement on when to declare Ipi a failure and apply for the  Anti-PD1 EAP but stated that nobody could tell if I would be in the condition at the time to still be eligible.

all in all this looks like the start of a tough 3 months in a dark valley with the only hope that I will be able to celebrate my 36th on Nov 4.

if anybody has a better idea than what I have been planning now or any hints for my Ipi experience I would be grateful!

thanks to you all,

Chris

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Gene_S's picture
Replies 1
Last reply 8/1/2014 - 5:14am
Replies by: Anonymous
TY BOLLINGER GIVES YOU A GREAT LITTLE E-BOOK ON SUGAR

Just this week I got a copy of Ty Bollinger's latest attempt to help you with information.  He calls it "Sugar -- The White Death."  Most of you know that Ty is a fellow author on natural cancer healing.  His book is called "Cancer -- Step Outside the Box!"  You'll find this great four-page article from Ty about sugar here:

http://TheTruthAboutCancer.com/download-sugar-white-death/

If you want to know all the variety of sugars and the health problems they cause, please read this short e-book. 

 

 

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Anonymous's picture
Anonymous
Replies 0

I just learned that my wild type melanoma tumor has the NRAS mutation.  I have had one recurrence since initial diagnosis that was surgically removed.  I am stage III after the last tumor removal.  

What are some of the potential treatments for this tumor mutation?

Thanks.

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/31/2014 - 8:53pm
Replies by: VLMD1986

If a sentinel biopsy is done and there is no Melanoma, and then it returns years later in the lymph nodes does this mean you are stage 4?

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/31/2014 - 9:06pm
Replies by: VLMD1986, SABKLYN

Hi!

I'm hoping you all can ease my mind...Three years ago I was diaganosed with Stage 1b melanoma and I had a wide excision and moved on with life. I've been seeing a derm 2-3 times a year since then. In the winter time I was having stomach pain and a general dr sent me for a ct scan which revealed enlarged nodules the dr then suggested going to see an oncologist just in case my very early stage of melanoma had spread. Long story short my enlarged nodules have not grown so they do not believe there is any reason for metestatic cancer. In the meantime they did a shave biopsy on one of my moles last week...I called today for the results and they stated the results were negative but the doctor wants to review the slides before giving the all clear and said he wouldn't have the final results until monday.

 

Long story short does anyone know if its is typical for dr's to review the pathology slides? Also since it was just a shave biopsy and there wasn't much taken out can there be false negatives? I'm just tyring to figure out why if the results where negative why can't they give me the all clear...It's already been a week and I really hate having to wait any longer. I'm sure there's nothing to be worried about but I would love any input on this. 

 

Thanks :)

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Kdw2012's picture
Replies 3
Last reply 7/31/2014 - 11:11pm

I need some knowledgable information on which of these treatments I should choose to do? I was told that the Yervoy has a curative rate of approx 20% while Zelboraf is not.

We are waiting to see what the insurance will cover but my doctor told me to do some research and make a decision on which I prefer.

i am BRAF positive

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/31/2014 - 8:46pm
Replies by: Anonymous, washoegal, gaby
 
Hi! Well- for the past few months I was posting as stage 1b- But my surgeon just called and said they sent my lymph node to another pathologist who found 1 microscopic melanoma cell. I guess from here I get all other nodes removed will take interferon. I am terrified! I have a 6 month old baby and am afraid I won't see her turn 5. Is there hope???? Please tell me stage 3a could survive.
 
 

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ashleyelizabeth's picture
Replies 7
Last reply 8/1/2014 - 7:42am
Replies by: ashleyelizabeth, VLMD1986, Janner, Anonymous, washoegal

Hello all :)

I am a 27 year ok healthy mom of a 2.5 year old boy (my everything!!).  About 3 weeks ago my sister noticed a black mole on my back and said I should get it looked at.  Naturally I am a worrier and slight hypochondriac so I called my doctor right away.  She set me up for an appt. I went in and showed her my mole.  It was miss shaped light and black and raised.  All the characteristics I don't want to have.  He said she was concerned but not worried.  He said some back tomorrow and have it removed so I did.  I right away thought this is it, it'll be cancer and my life is over.  Well my whole family said it's nothing, don't worry, skin cancer isn't going to kill you.  

My doctor called me today after two weeks and said that it was malignant.  My heart stopped, this is so devastating!!! She said the biopsy says that the mole is localized and malignant and that I need to go to a plastic surgeon to have more removed.  

I don't even know what to think, I don't know what this means and I am trying har but all I can't think is my baby will lose his mom!! 

Any advise would be lovely!!

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madhatter84's picture
Replies 1
Last reply 7/31/2014 - 4:12pm
Replies by: hannahcopeland1

Hi everyone,

 

I haven't posted on here before - living in the UK and on trials with the NHS. My blog gives a good overview but basically I was diagnosed Stage 2 in May 2011 and that was upped to Stage 4 in Sept 2013 with 2 brain tumours removed and an inoperable pancreatic tumour diagnosed. I was then put on Vem however have recently been informed that I've got 5 brain tumours after having had WBR in May 2014. They are small but present (told a couple of weeks ago). I've now been pulled off Vem and put onto Yervoy - had my first infusion on Monday and so far no side effects with the hope of Gamma on the 5 tumours in my brain if they haven't grown. 

My question is are there any experiences of Yervoy and in particular with brain mets? They are the ones that are worrying me quite a bit. I still am working full time and at the moment haven't got any side effects from them (had a few headaches but no mobility or speech issues which is what I really want to avoid). 

Thanks in advance!

 

Andrew

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Brigitte's picture
Replies 4
Last reply 7/31/2014 - 4:25pm
Replies by: Brigitte, Janner, Kim K

I was wondering if someone could help me understand my biopsy report. 

On top is says clinical diagnosis  Lentigo VS. MM  (does that mean what my docter dignosed and sent to the patholoogy, or what the pathologist diannosed? 

 

under that is says: Diagnosis: Compound Nevus with dysplastic Features.

Sections show a compound nevomelanocytic prolifeeration exhibiting dysplastic features, primarily in the form of lentiginous architectural disorder and asymmetry, accompanied by random, relatively mild, cytologic atypia. Junctional changes are focally advanced, perhaps indicative of progression, such that a conservative complete excision is recommended. 

Im a little freaked by the words focally advanced, perhaps indicative of progression. Does that mean that maybe I do have cancer but they cannot tell until they get the excersion biobsy?    Please help me understand what all this means. 

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Tracy Chicago's picture
Replies 2
Last reply 7/31/2014 - 11:43am
Replies by: Tracy Chicago, Janner

Hi! I had my second melanoma removed (level 1) and it's pretty small. Who should I have do my wide excision?  My choices are a plastic surgeon who specializes in melanoma or a surgical oncoglogist.  Would a surgical oncologist be over kill for a melanoma that was less than 1mm?

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RJoeyB's picture
Replies 4
Last reply 7/31/2014 - 10:13pm
It's been about six weeks since I posted about this and wanted to give an update following my most recent set of scans.  Rather than recap what's been happening, here's a link to my post from June (apologies in advance, it's entirely too long, as is this post, but no one ever accused me of not being thorough ;-)
 
 
So I've been on Decadron for the past six weeks to try to reduce the swelling and perhaps resolve the motor control symptoms I've had in my left leg, e.g. limp and awkward gait, knee weakness, reduced ankle motion, can't curl toes, etc.  I've continued to take my daily walks, 2-3 miles in the evening and some longer ones on the weekend, but really didn't see any improvement in motor control.  Some days a little better, some a little worse, but overall about the same.  I've also noticed in the past couple of weeks new weakness and range of motion in my left arm — the top half of my left humerus is a 10" titanium rod from back in 2010 to remove one of my original mets, so it's limited to begin with, but this limitation is new and definitely related to the motor control issue.  My expectation going into the scans these past two weeks was that things would be stable at best, with no indication if this was new tumor growth or radiation necrosis.
 
My regular three-month PET-CT was last week and in addition to the continued vigilance for the dreaded "new met", there were a couple specific things we were on the lookout for:  continued response of the lung met that was treated with SBRT in February and an area of possible concern in my distal ileum (near where the small intestine and large intestine connect) that lit up on my April PET.  We know that the PET will rarely be able to show anything in the brain because it naturally lights up "hot" throughout, so weren't expecting any answers, only looking to keep things uncomplicated as we try to focus on whatever is happening brain-wise.  Good news with the PET.  The lung met didn't even get honorable mention in the report for either size or activity.  The intestinal area is lighting up still but doesn't appear to be associated with any mass; given that it was also scoped (lower double-balloon enteroscope, longer than a colonoscopy into the small bowel) in May with no clinical finding, there is string belief that it's transient GI inflammation likely associated with the partial small bowel resection where the tumor used for my TIL cell harvest was removed about three years ago.  We've seen it before but have to continue to watch it.  And no new areas of concern elsewhere on the PET.
 
Monday was the repeat brain MRI.  Given how things have progressed, or not, I was expecting that things were going to look about the same and we were going to be in the same position as we were six weeks ago, without any real answers and looking at another period or observation — and more cursed Decadron.  The news was a little better, considering that I haven't had any improvement in the physical symptoms.  The "enhancement" or new activity all around the edge of the original tumor bed has substantially reduced, and the area of cerebral edema (swelling) extending outward from there is perhaps half to two-thirds of the size it was on the last scan.  This isn't activity that would be expected of new tumor growth on its own — remember, I'm not currently actively receiving any PD-1, ipi, or BRAF/MEK therapies — so this is likely radiation necrosis. Still potentially serious, as necrosis can continue to advance and be as problematic as a tumor.  But it can respond to steroids or even on its own over time.
 
The fact remains that I'm still experiencing motor control problems, but they believe that the necrosis should continue to resolve and as it does, the symptoms will also improve.  Even if the swelling is only half of what it was before, it's still squarely centered in the "motor control strip", so may not improve until it fully dissipates.  The plan is to try tapering off the Decadron over four weeks, to see if the necrosis will continue to improve on its own.  We're going to add Trental and vitamin E, which can assist but aren't nearly as effective as the steroid — I don't know a lot about either with regards to necrosis so won't say much about them — then repeat the MRI in eight weeks.  Should I experience any worsening of physical symptoms, resuming the Decadron is an option, but they want to get me off them as soon as they can...  no argument from me, it's a miserable thing — I need a good night's sleep and look like Humpty Dumpty, among other things, and my family is probably ready to toss me on the street from the moodiness.  Truth is, I've managed O.K. compared to the severity of Decadron stories I've heard from others.
 
So, it looks like radiation necrosis that is improving.  There is a possibility that this could be cyclical, with "flare-ups" of activity, which means continued vigilance for necrosis or new tumor growth if things change and periodic or longer-term use of steroids.  But my radiation oncologist also said that even if that happens, there is usually a "hump", often around two years, where even cyclical RN starts to settle down.  
 
Altogether, though, the news is as good as we could have hoped compared to where we were six weeks ago and allows our family to collectively exhale a bit — time to focus a little more on daughter #2's college search and break some of these crazy Decadron food cravings — back to the Stage IV limbo.  Hopefully the physical symptoms start to improve soon.  Just wanted to share — we learned a little more the past six weeks, if only I could apply the time spent to learning to play piano or something...
 
Best to all,
Joe
 

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KimP's picture
Replies 6
Last reply 7/31/2014 - 3:43pm
Replies by: Janner, CHD, KimP, washoegal

Hi. Used to come here. First husband had melanoma and passed away 6 years ago. I just had mole biopsies with the subject line. Derm says it is cancer. I say it is not. What do you all say?  I was Horski or Kimmyie back then if any of you were here then.

KimP

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Beth_A's picture
Replies 6
Last reply 7/31/2014 - 10:56pm
Replies by: BrianP, Beth_A, washoegal, RJoeyB

Hi again to all. I met my doctor yesterday at the IU Simon Cancer Center in Indianapolis. He seems very knowledgeable and was extremely nice. He spent a lot of time with me and my husband, completed a very thorough skin exam (thankfully found nothing else of concern), and mapped out a plan. Unfortunately, the person who removed my mole was pretty much an amateur and opted to simply shave it off (she really thought it was a hermangioma). The lack of a punch biopsy muddies the waters somewhat as establishing depth is more iffy. The depth of mine was, according to the pathology report, at least 1.05mm. He's going to take a margin of 2cm to be certain and on the safe side. He further explained he would be getting a SNB, and going for my left axilla - but may need to get one from both depending on what shows up during the lymphatic imaging as my lesion is just left of the center of my back. He stated there was only really about a 20% chance that it had spread to the lymph nodes! which made me feel substantially better. He did go on to explain that, if positive, all the lymph nodes in that location would require removal. He added we would be having other conversations if this were found to be the case. So my wide excision is scheduled for next Wednesday at 0900, but I'm to report there at 0530 to prepare for my lymphatic imaging at 0700. Won't know my staging information until the pathology reports come back on my surgery - about ten days from the surgery. Hope things go uncomplicated and well - I'm planning to go to Glacier National Park for an annual trip there by mid-month and I'll have a new grandbaby to start spoiling in Calgary, too! Dr. Schwartzentruber said hiking would be ok, and anything needing further attention could wait till I got back. He also gave me a most valuable piece of information for anyone early in treatment. He said not to give up doing the things I enjoy doing that involve the sun - for example, I am a landscape photographer and hiker - but to either cover up or wear sunscreen. I appreciated that as I, like I'm sure many newly diagnosed people do, was worried this meant my outdoor days were over. I'm afraid that would have been difficult for me.

I wanted to return here to say thanks for letting me know what to expect - you all were spot on with your information. Your support was and is welcomed and appreciated. 

 

 

Beth A.

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Anonymous's picture
Anonymous
Replies 6
Last reply 7/31/2014 - 1:48pm

Hello,

 

I'm not oncologist, just a GP and I wish I can help one of my patient and friend here in Europe to access this treatment (or the other anti-PD-1 antibody) ...

Is there a way to get it under "compationate use" she will pay for it , is she can afford...

Looking for any assistance in this way,

 

thank you for this usefull board

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